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Mama And Baby Both Celiac


veggiemama

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veggiemama Rookie

Hi,

I just wanted to introduce myself. I found out recently (within the past week) that my daughter and I are both celiac. She is almost 12 months old. She has had rashes basically since she was born. She is breastfeed, and I found out that wheat bothered her through my milk when I would eat wheat but I never thought it could be celiac. I did not know much about it.

Before knowing that we were celiac, I stopped eating wheat but then I started eating it again and her rashes came back. Again -- I never really thought more into it other than "oh she must just be sensitive to wheat right now"

All my life I have had digestive problems and I knew that eating wheat in particular really aggravated my stomach from time to time. I actually went wheat-free and sugar-free for a long time (I'm vegan) and felt better. But during the pregnancy is really when I started having problems. My midwife wanted me to eat "protein protein protein!" so I added wheat to my diet again. I ate bagels, sandwiches... not to mention other gluten containing grains.

After the birth, my stomach problems got even worse. I felt nauseated lot but I did not know why. Recently, I got food poisoning which was awful and when I started feeling better and was able to eat again, I started eating rye bread sandwiches, spelt pretzels and wheat crackers (before I knew I was celiac obviously) and I started to feel bad again. Now my stomach is so aggravated I can hardly eat without feeling nauseated and having stomach pain. Its probably been about 3-4 weeks since I've had gluten. Shouldn't I start feeling better? I've been living on potatoes. My next approach is drinking fresh raw juices because I know they heal the digestive tract.

I'm off all grains even ones that do not contain gluten, soy and all nuts. However, this is not a problem to me since I am not able to eat much of anything at the moment.

Any thoughts or suggestions will be much appreciated :)


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ItchyMeredith Contributor

Welcome! You came to the right place. This board is an amazing hub of celiac information. I have learned so much in my 8 months here. I too am a vegetarian celiac. I believe mine turned on during my first pregnancy but I only found out in June. We are trying to find out if my oldest is celiac too. Just curious- how did your baby get her diagnosis? It is wonderful that you found a doctor who was able to get to the bottom of this. Many parents struggle for years to find the answer.

My advice to a new veggie celiac is to:

1) Read everything you can about celiac and arm yourself with information. After reading just a couple of books you may find that you know more about celiac than your family doctor. 2) Also- stay active on here and feel free to ask questions. BabyCenter.com also has a board for parents of kids with food allergies. Celiac is not an allergy but that is where the celiac mommies go too. There is also a board called Vegiac for vegetarian/vegan celiacs. Open Original Shared Link 3)Get a few cookbooks. My favorites are The Gluten-Free Vegetarian Kitchen by Donna Klein, and The Gluten-Free Vegan by Susan O'Brian. I got both of these on Amazon.

Good luck with everything! You and your baby will be fine once you get adjusted to the diet. Message me if you have any more questions.

Mere

dandelionmom Enthusiast

I was going to suggest cutting out dairy then I realized you're vegan so that doesn't help! I wonder if you need to go back to the doctor for allergy testing to see if you're allergic to any of the foods you're eating.

I ditto the suggestion to check out the Vegiac site. I'm a vegetarian with celiac and it gets hard to think of what to eat sometimes!

veggiemama Rookie

Thanks for all your suggestions.

Is there anything that may be good to put topically on my daughters rashes until they clear up? She reacted to the gluten in my breastmilk when I was eating gluten-containing foods. She itches the rashes.... I have heard of putting diluted apple cider vinegar on the rash (as well as putting some in her bath). That seems to be helping.

missy'smom Collaborator

There is a skin condition associated with celiac disease called dermatitis herpetiformus(sp?) that is itchy. There is a cream they can prescribe for it. You can read about it here at the Celiac Sprue Association website.

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    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
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      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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